Stay updated with the latest rare-disease news, articles, and insights from trusted sources. Explore in-depth coverage and expert analysis on rare-disease topics.
New Delhi [India], April 3 (ANI): US President Donald Trump's decision to impose a 100 per cent tariff on patented pharmaceutical imports--citing national security and supply chain risks following a Section 232 probe--is expected to have a mixed impact on India. Crucially for India, the proclamation clarifies that generic drugs--a segment in which Indian firms dominate globally--are exempt "at this time," adding that such products "shall not be subject to Section 232 tariffs." For India, the i ...Read More >
New Delhi, Oct 16 (PTI) A study has documented an instance where genome sequencing and result interpretation were completed within just four hours, demonstrating the technique's feasibility for routine clinical use. Described in an article published in the New England Journal of Medicine, the time clocked to sequence one human genome surpassed the Guinness World Record of five hours and two minutes, which was achieved by a team from the US' Stanford University on March 16, 2021. Researchers an ...Read More >
NEW DELHI: The National Hunter Alliance Summit 2025, held on 27th September'2025 in New Delhi, brought together patients, caregivers, medical experts, policymakers, and advocates to address the urgent and ongoing challenges faced by individuals affected by Hunter Syndrome (MPS II) and other Rare Diseases. The program began with an emotional tribute to the Hunter Syndrome warriors who lost their lives to this devastating disease. Their memory served as a reminder of the pressing need for action a ...Read More >
New Delhi: The GST rate cuts announced last week will make medicines used for the treatment of critical conditions like multiple myeloma, lung cancer, blood cancer, lymphoma, Gaucher disease, Pompe disease and haemophilia significantly cheaper and help more patients to avail of treatment, health experts said. A pack of leukaemia drug asciminib 60 (40 mg tablets), which used to cost ₹2,35,000 with GST, will become cheaper by ₹25,000, as per data from market research firm PharmaTrac. Obinutuzu ...Read More >
HÀ NỘI While more than half of people living with rare diseases in Việt Nam are children, access to rare disease treatment remains limited due to high costs and a lack of comprehensive health insurance coverage. According to the Ministry of Health, Việt Nam has about six million people living with rare diseases, 58 per cent of whom are children. Data shows that an alarming 30 per cent of children with rare diseases die before the age of five. Rare diseases often include metabolic disord ...Read More >
NEW DELHI, 20 August 2025: Dr Vinod K Paul, Member (Health), NITI Aayog today stated that rare diseases are estimated to collectively affect close to 90 million Indians, making them both a health and societal challenge. He emphasized that with only a fraction of the 7,000 rare diseases having approved therapies, indigenous manufacturing, stronger registries, and multi‑ministerial coordination must be prioritized. Addressing the National conference on 'Rare Diseases', organized by FICCI, jointly ...Read More >
Advocacy group urges swift implementation of procurement process to benefit patients Cure SMA Foundation of India, a parent-led patient advocacy organisation for Spinal Muscular Atrophy (SMA), has commended recent steps taken by the Government of India, the judiciary, and healthcare stakeholders to address rare diseases. The Ministry of Health and Family Welfare and the Delhi High Court have allocated over Rs 900 crore for rare disease treatment, including SMA, marking a milestone for the com ...Read More >
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